Who can enter
- Children (0-18 years) with life-limiting conditions and/or complex chronic care needs
- Parents of children (0-18 years) with life-limiting conditions and/or complex chronic care needs
- Healthcare providers in primary, secondary, or tertiary care settings, who have attended the training ‘Advance care planning with the IMPACT method’ in September/October 2024 or the IMPACT training organized by the Dutch Centre of Expertise in Pediatric Palliative Care
Goal
The goal of this study is to gain insight into:
- The communication during pediatric advance care planning conversations*
- The content of pediatric advance care planning conversations*
- The experiences of children, parents and healthcare providers with pediatric advance care planning conversations*
- The documentation of the pediatric advance care planning conversation* in the medical record of the child
- The changes in care and treatment of the child and family after the pediatric advance care planning conversation*
*Across various disease phases and conditions
Background
Talking about what matters now and in the future when living with complex care needs is not self-evident. Looking ahead can be confronting, yet may also bring peace of mind and a sense of direction. By engaging in conversations about what the child and family consider important in their life, care and treatment can be better aligned with their wishes. This contributes to maintaining and improving the quality of life for both the child and the family.
Healthcare professionals are motivated to engage in conversations about advance care planning, but often lack guidance on how to do so. In 2019, the IMPACT Toolkit was developed to support healthcare professionals, parents, and children in discussing their values, goals, and preferences for care and treatment.
Currently, IMPACT is primarily used within pediatric palliative care. However, starting advance care planning early can ensure that care aligns with what the child and family find important. It can help guide future decisions and shared decision-making throughout the illness trajectory.
In 2024, the IMPACT Toolkit was further developed. The result is a conversation guide for healthcare professionals, the ‘Het Belangrijk’ conversation card for children and families, and a new training program for healthcare professionals.
This study aims to explore experiences with the updated IMPACT methodology in daily clinical practice. The new intervention is designed to enable advance care planning for all children – no matter their diagnosis, disease phase, or sociocultural background.
Healthcare professionals who have been trained in the IMPACT methodology conduct pediatric advance care planning conversations with children and their parents in their own clinical practice. This is part of routine care. If the child and/or parents provide consent, the audio of the conversation is recorded. After the conversation, the healthcare professional(s), parent(s), and – if possible – the child are invited for an interview to talk about their experiences with the researcher.
There may be a practical and emotional burden for participating children and parents. An appointment for the advance care planning conversation with the healthcare professional takes time, but this is part of the routine clinical care. An appointment for the interview with the researcher takes extra time. Both appointments can be emotionally burdensome, as children and parents reflect on the illness trajectory and their personal experiences. Previous research shows that sharing such experiences can also be supportive and helpful for children and parents. Therefore, the burden of participation is expected to be minimal.